Type 1, low mood

[GotTheBlues]

Hi all, I was diagnosed with Type 1 last year (I'm in my early 40s). Generally, I've adapted and am quite diligent with checking my blood sugars and keeping it under control, though it can feel relentless at times. I was always fit and healthy pre-diagnosis, looked after myself and in my lower moments now, I can feel sorry for myself!

One thing I have noticed (and so has my wife!) are my fluctuations in mood. When I'm low, I can be grumpy. But I've also noticed I'm moody when my blood sugars look relatively normal. I find after a hypo, when I've 'recovered', I can still feel moody with my wife and kids. I was wondering whether anyone else experiences this? I'm curious as to whether the fast 'climb' after a low can also lead to grumpiness? I had my moments like everyone, but before diagnosis I was generally not a moody person, and when I was having a bad day, I always knew the reason..

I feel the psychological aspect to managing diabetes is rather neglected by the NHS and no one really talked to me about this at or after diagnosis. All the info I've had has come from online. Diabetes really does get inside your head and it's this, rather than the actual practical aspects of it, that I find the challenge. Can anyone else relate?

 

[rebrascora]

Hi and welcome.

It is good that you have found us because exchanging experiences and ideas with others who manage the same condition can be hugely helpful even if we often have very individual experiences.

How low are the lows when you get "grumpy"?

Personally I tend to feel a bit like i do when I am drunk when I go low....Quite happy but a bit detached from reality like I am looking at things from a distance or through someone else's eyes and I have to concentrate really hard to focus on things and my mind gets stuck in a rut if I am trying to figure something out or problem solve. On the other hand I get quite emotional and irrational when my levels are high. What I do often find with lows, is that I feel worse after I am coming back up. I think it may be down to individual responses to adrenaline, so it may be adrenaline making you grumpy or difficult when you are recovering or perhaps the adrenoline causes the release of other hormones which can effect your mood.
It is the same as with alcohol in that some people become the life and soul of the party when they have a bit to drink and some become morose and some can become violent and there are certainly diabetics who do become aggressive and lash out when they are very low I believe, so it is likely an individual response.

Best thing to do is try to avoid lows as much as possible.... not easy I know!! .... but there are education programs and tech to help with these things and even just being part of this forum, you pick up lots of tips and tricks to improve your diabetes management which all helps to reduce the frequency and depth of the lows you experience.

Do you frequently have hypos during the same period of the day or night?
Are you on a pump or MDI? And which insulin(s)?
Do you have Freestyle Libre?

Diabetes management is a constant and relentless regime and burn out, as well as eating disorders and other psychological problems are common. Unfortunately there is not nearly enough treatment and support for mental health issues in general let alone diabetes related ones, but self help through the likes of this forum can be really beneficial and there is the Diabetes UK helpline if you feel you need to talk to someone.
I am finding regular exercise is helping me at the moment and I follow a low carb way of eating so I sometimes only need to bolus for one meal a day which eases the strain a bit but we can all relate to feeling overwhelmed with it all at times and wanting a break from it or someone else to carry the responsibility of it all for us for a bit.

 

[GotTheBlues]

Thanks for your reply.

My lows generally are not too 'low' - generally I feel hypo-like symptoms just above 4, where I will feel shaky, on edge, sometimes confused. I'll also get snappy. After recovery, I can then feel snappy for a while - like you suggested, this may well be down to hormones in the body. When I'm high, I'm more like lethargic than grumpy.

Looking into getting a Libre - I think that might help with monitoring when I'm going low.

Yes, I find exercise helps and a long walk does the world of good for my mood. I've also dabbled with low carbs as well, which again is great but I would not want to do it every meal as I feel it's too limiting.

I think coming to terms with the diagnosis as an adult is half the battle. I'm probably still in that process, and at times accepting things have changed is difficult. Luckily I've got a very understanding wife and six days out of seven are good, so it's not all bad at all!

 

[rebrascora]

Yes, one of the big frustrations with diabetes is that just when you think you have got it cracked, it changes and you have to figure it out again. My basal needs have been all over the place recently to the point that I have had to adjust it almost every day.... mostly downwards as I was hypoing through the night. Thank goodness I am on Levemir which responds to my changes pretty quickly.

Libre is fantastic! You learn so much from it but like any tool you have to use it wisely. I self funded for 3 months until I got it on prescription. Not cheap but worth every penny....I actually spent my birthday money on it! That said I had already been sanctioned for it on prescription but was delayed due to Covid so I knew it would happen eventually. Some people have self funded and then not been able to get it prescribed because their HbA1c had improved, so you might want to sound out how things are at your clinic if you are thinking of self funding. It's not something many of us could afford to self fund long term!

 

[trophywench]

One of the criteria for getting it on the NHS is to have self funded for 3 months (but still continuing to test test test as normal with your Bg meter) and being able to explain to your clinic how the Libre has informed you and how you've responded to that info which you didn't have available before. Myself I've always been rather sceptical about Libre which still isn't mega accurate for me so can't trust it instead of BG when bolusing - BUT being on a pump, I have been able to change some of my hourly basal rates to try and improve my 'Time in Range'. I got it prescribed about the middle of September and as it happens my annual 'GP' HbA1c is happening at the end of next week - so we'll all be able to see if it's made a difference. My last hospital one was July or August - so hopefully we will see a difference.

They only sign you up for a 6 month trial to start off with, anyway - so it has to be reviewed at that point to see if it's worth carrying on spending the money on you!

There are other criteria, like too many hypos or too many hospital admissions - so check them out!

 

[rebrascora]

I was authorised for it permanently straight away without a 4 week or 6 month trial, so there does seem to be some flexibility in the system of prescribing. Maybe local initiatives change the goal posts in some areas. I was told it was to be a permanent arrangement for me before I started self funding (I specifically asked) so I knew I had nothing to lose by self funding in the mean time, other than a hefty chunk of cash!. We do have members of the forum who self fund and are still struggling to get it prescribed even though they can show improvement, so it does sometimes come down to your local prescribing policy or even just how progressive/proactive your consultant is in adhering to that policy.

 

[Inka]

Hi @GotTheBlues I find my blood sugar affects my mood - particularly if it’s swinging up and down. Lows make things feel more intense and highs make me feel irritable.

When I was first diagnosed, the mood swings were more obvious. I don’t know why. Maybe we get used to changing blood sugars a little? Maybe we gradually fine-tune our insulin to avoid too many swings?

I also think the emotional/psychological aspect of diabetes is often neglected. I felt upset and angry when I was diagnosed, and then quite down when I realised it wasn’t going away. What helped me was just taking one day at a time and remembering that diabetes has to live with me not vice versa!

 

[trophywench]

Well Inka is 100% correct - we do adjust our behaviour to avoid swings, both in what/when we eat and insulin timing and dosage. No way do any of us want to have swinging moods for no particular reason and I know I did for quite a long time - so was gobsmacked when the enraged intervals came back 20-odd years later (but that turned out to be me 'ormones so I got that cured via a hysterectomy)

I was never enraged when diagnosed, because I understood it was auto-immune so No Way Jose could I actually have done anything to prevent it - but there again that made me feel utterly useless and being 'me' that resulted in my just dissolving in tears (most unusual for me at that time) from time to time at the most inopportune moments sometimes - so perhaps your 'grumpy' is your personal manifestation of my sobbing? There IS no explanation as to why it made me feel like that, it just did and that's all there is to it. My (still new-ish) husband was really brill at the time I have to say and that really surprised me because he'd just hug me and pass me the tissues till I'd finished and not ask stupid questions, from when he'd initially asked 'What's the matter?' and I'd replied 'An attack of the 'Why Me?' again'. I was doing it relatively often to begin with, but it gradually wore off until one day I was shocked when it happened out of the blue and I said after 'Gosh! - that hasn't happened much recently, has it?' and we both realised it hadn't. And then it just stopped ever happening again!

I also decided quite early on, that diabetes had to live with me, quite independently of anyone else's influence - so I was better off trying to co-exist with it and hence make the necessary allowances for its behaviour whilst not pandering to every whim. Bit like an extra child really! Except I don't love this one .....

 

[pm133]

It's very early days for me (under 3 months) but I've not experienced anger. I've experienced a little fleeting frustration when I see obese friends talking about having beer and a takeaway without a care in the world but it doesn't last ,long and like @trophywench, I found it comforting to know it was type 1 and that there wasn't any way I could start blaming myself.

I like being in control of things so getting early control over basal and bolus amounts, recording data etc was fine. I'm quite motivated about things like that.

I do get grumpy when I'm hungry or in pain. I have a lovely wife who instinctively wants to help when she sees me struggle but when I'm like that I want to be left completely alone to recover. Offering unsolicited help is a red rag for me. Almost 30 years together and she still forgets that 🙂

Weirdly, when I get minor hypos I quite like it because it means I get some delicious glucose tablets without bolusing. I suspect that'll get old quite quickly though.

 

[trophywench]

The initial euphoria re non-bolusing wears off a lot quicker than many of the other things, unfortunately for you.

I forgot to say before, my 2nd husband says having T1 makes people liars - because if my mouth goes peculiar (can't elaborate on that, looks normal to me and it's only certain other people who say it isn't, because it's a visible demonstration of the fact I'm hypo) so he knows I'm hypo, and suggests to me out loud that I am so should test, I always tell him I'm most certainly not hypo and to begin with, wouldn't test. Wasn't until my section head at work heard this from him that she said she'd noticed that as well so hence thereafter, when either of them said that, I just raised my eyes skywards, mentally shrugged my shoulders and I did test and Bug’ration !! - they were only right.

 

[Ivostas66]

I actually had some really good support from the NHS Mind Matters about 18 months after diagnosis - problem was it was a three session course over a period of 6 weeks. At the start I was quite low; catastrophising almost everything. At the end I was told that I had made phenomenal progress and was recovered. I left thinking that I was 'cured' and for about 6 months things were great. Problem is there are times when things out of ones control really hit you for six and all the support and help I received previously went out of the window. There is a great deal of support on here, mainly because almost anything that you encounter there are usually a few people who have been in exactly the same position and can offer invaluable help.

I still feel guilty whenever I have a hypo - especially if it scuppers others plans or means that I am having to rely on the support of someone else (especially at work) and I don't think that is ever going to change, so I will need to get used to it.

 

[Lizzzie]

Hello! I am at my worst tempered when I am high. The worst feeling in the world is checking your blood sugar after yelling at your kids and going: 'oops. perhaps that more my fault than i was letting on, then.' A fairly low BG feels confortable for me; we are working in this. I wonder if this changes peoples tendencies to let it run a bit high or low, then theyve got their eye off the ball?

 

[Lizzzie]

high or low WHEN theyve got their eye of the ball

 

[trophywench]

high or low WHEN theyve got their eye of the ball

Well yes I'm sure it does - much the same as avoiding going down certain big hills in your car when you know your brake pads need replacing and car isn't booked in for the work until the weekend. Trouble is if it's not booked in until next month or 'when I can afford it' - you get entirely out of the habit of going that way - even though it saves you a mile or two.

Overshooting the stop sign at the bottom of the hill could be curtains immediately - whereas the extra cost of the petrol going the longer way round, doesn't become apparent that soon, so isn't at all noticeable until you work out how much you spent of petrol this week/month/year - if you even bother doing that!

 

[Ditsy daisy]

Hi all, I was diagnosed with Type 1 last year (I'm in my early 40s). Generally, I've adapted and am quite diligent with checking my blood sugars and keeping it under control, though it can feel relentless at times. I was always fit and healthy pre-diagnosis, looked after myself and in my lower moments now, I can feel sorry for myself!

One thing I have noticed (and so has my wife!) are my fluctuations in mood. When I'm low, I can be grumpy. But I've also noticed I'm moody when my blood sugars look relatively normal. I find after a hypo, when I've 'recovered', I can still feel moody with my wife and kids. I was wondering whether anyone else experiences this? I'm curious as to whether the fast 'climb' after a low can also lead to grumpiness? I had my moments like everyone, but before diagnosis I was generally not a moody person, and when I was having a bad day, I always knew the reason..

I feel the psychological aspect to managing diabetes is rather neglected by the NHS and no one really talked to me about this at or after diagnosis. All the info I've had has come from online. Diabetes really does get inside your head and it's this, rather than the actual practical aspects of it, that I find the challenge. Can anyone else relate?

Hugs i can definitely relate yes I think there should be more support with diabetes and how it affects your health

 

[Ditsy daisy]

Hugs i can definitely relate yes I think there should be more support with diabetes and how it affects your mental health